Chances of having Pheochromocytoma

My mother had a rare cancer called Pheochromocytoma for 4 years. My mother had pheochromocytoma 2 years before having me and passed away from it when I was two years old...which means she conceived and gave birth to me while having this cancer. Even though Pheo is really rare, do I have a higher chance of getting it since my mother conceived me while she had cancer?

[Joele]

Hi I had a Pheo tumor while I was pregnant as well.  That was 7 years ago.  Was your Mother under the care of a Dr when she was discovered to have the Pheo?  The reason I ask is that most of the time the cure is to find and get the tumor out asap.  Now, sometimes the tumor can be as small as a few cells big and won't show up on all the tests and scans that are used to find the little buggers.
   I did say that the cure for a pheo is an operation.  But for some the story is not over.  Pheochromocytoma is genetic in some cases.  I think that more and more the "experts" are looking like maybe all pheo tumors are genetic.  With that information if I were you I would go to one of the smartest places on the www (in addition to here) and go to a site called Pheochromocytoma Support on Yuku.  You will know you are there when you see what is called the "Blackboard" .  Go read the Welcome area and go learn about the different types of syndromes that can have pheochromocytoma as a component.  Go learn about how to get your self and other family members tested.  Sometimes you can even get into a study and you can get a lot paid for for letting them study you.  
      I would start with an Endocrinologist and a geneticist to get yourself cleared.
Go look at all the information on vhl, mens, and the different types of syndromes.  Several others in my family had tumors as well as me but I was the first that had a diagnosed Pheo tumor.  These tumors maybe related.   I have yet to get my genetic testing, but I look a lot like a vhl syndrome survivor.  I just learn all about the syndromes and watch my child and others in our family (my sibs) to see that they are not loking like I was.  Make yourself real familiar with the symptoms so you can spot it.  That is our defense.  Your Mom would be proud of you that you are looking into this.  Even if you end up having one of the genetic makeups to grow a Pheo, it does not mean you will ever have one.  Get tested.  Then you will know if you or your children (now and future) will ever have to look hard for tumors and will know where (what type, vhl, mens, one of the syndromes).
    Now, I do worry about my child that they may carry the genes for one of the syndromes that can grow a pheo tumor.  If you go read it will say the these tumors are sporadic, but I think the concensus more and more leans toward them all being genetic.  They are so rare that no one knows what these other syndromes look like.
         There is an entire field opening up which looks at what happens to us when we are invitro (in our momma's belly).  Definite links have been made between what happens to us there and the illnesses and diseases we develop later in life.  Look up Holland and World War II and maybe heart disease or diabetes.  I think that there is where researchers started to see a link between our lives invitro and later.I feel bad that I was pregnant for my child while I had my tumor.  It was so hard.  I feel for your Mom.  She must have really wanted you!  Did she know she had the tumor before she become pregnant?  Most I believe would be advised to not become pregnant.  Or, did the Doctors tell her about how long she may have had the tumor (which would have been a few years before conceiving you) in retrospect?  Was she on bed rest the entire time?  I was.  I tell my kid he is a champ for surviving all that and was meant to be here.  We give high fives to each other for surviving that together!  You are a champ too for making it!  
    I brreast fed my child.  I worry about the adrenaline/ noradrenaline breast milk I must have been giving him and what that must have been doing to his little developing brain.  I did not know I had the tumor until he was three.  If I would not have gone to a good hospital (a research hospital the the National Instututes for Health or a University hospital) to have my tumor I would have not made it.  In recent years Doctors at the NIH and the big University affiliated hospitals have gotten real good at getting these tumors out with very few dying in the operation.  Good news for me.  The larger the tumor the worse your chances of survival in an operation I think.  
     I hope I helped.  I am not an expert (MD) or anything.  Just had to learn this since it was my fate.  Go check out Pheochromocytoma Support on Yuku.  We can help you with so much more in the way of details over there.  And there are a bunch of us over there to help since this is so rare.  Take care, Joele

[shannonwooten]

Wow, thank you so much for this very informative response!!

You know, I am not too sure if she was under a dr's care when she discovered that she had pheo. Honestly, I am not even too sure how it call came about...finding out and all. My Grandmother talks about her a lot but it is hard for me to talk about her or ask about her. How did you find out that you had a pheo?
I think I have seen the support forums before, the blackboard. I think I posted something a year or two ago... then forgot about the site. I am going to have to get back to the site!
I do plan on seeing a genetics counselor and getting tested and such. I am moving in January so I am going to contact a doctor when I get to Tx. Tx seems like it has some good hospitals so that is reassuring.
I really don't know if she knew that she had the tumor for 4 years. I know that she had the tumor 2 years prior to having me and then passed 2 years after having me. I am not sure how long she knew that she had the tumor. I think her tumor sat on top of her kidneys as well, though I am not 100% sure.
That is great that you and your son openly discuss it and make it so positive! It is def something to celebrate!

Thank you so much for the support and information... i really appreciate it!!!

How did the docs diagnose you? I told my urologist that my mother had Pheo.. and the blood tests that he is running is to check for cancerous cells. Would that show anything if pheo was in the picture. Lets def hope not... but I am interested if it would show up in a blood test.